Donate Tumor Tissue

Your Surgery or Fluid Drain Can Advance FLC Research

Fibrolamellar tumor tissue is critical to help cancer researchers learn what drives this disease and how to treat it. Studies often need large numbers of samples from different patients to adequately answer their research questions.

With a few easy steps, you can support current research by donating tumor tissue to the Fibrolamellar Cancer Foundation (FCF) Biobank.

What is the FCF Biobank?

The FCF Biobank is a centralized repository of tumor tissue, drained fluid and blood samples contributed by fibrolamellar patients. Our biobank protects and preserves these samples so we can distribute them to researchers all over the world, free of charge, to support important research into the disease.  Additionally, our biobank collects clinical information from fibrolamellar patients to enable research into factors that affect treatment and outcomes. By sharing freely with scientists, research using your donated samples will provide new insights, ultimately leading to more effective FLC treatments.

How is the tumor collected?

After a patient undergoes an ascites drain or surgery for their malignancy, most of the removed material is typically discarded and lost. With your consent, we can request that your doctor provide us the excess tumor tissue and fluid samples for research purposes.

How do researchers use the samples?

The FCF Biobank supports a wide range of research with the tissue and specimens that you donate. Some studies may do genomic research to look at the DNA and genes expressed by the tumor; others may look at proteins and other products made by the tumor to help identify new therapeutic targets.  In addition some tissue may be used to develop cell lines and tumor models, critical components for testing potential new compounds to treat FLC.

A single sample sent to our biobank is typically divided and shared among several different labs to support multiple research studies. During that process, it is possible that our researchers may discover something that might be relevant to you, but tests done for research purposes are not done to the same standards as those used to help make clinical decisions. Because of these limitations, the results of research tests should not be used to guide decisions about care. However, if we find something that could, if confirmed, have an impact on your diagnosis or treatment, we will share that information with your treating doctor so that they can decide whether it is significant enough to confirm with further clinical testing.

In this video from the FCF’s September 17, 2020 Virtual Fall Gathering, Patty Cogswell discusses the FCF Biobank Program.

How to Contribute

To donate tissue from an upcoming surgery or fluid draw

  • Contact Patty Cogswell (pcogswell@fibrofoundation.org; (919) 619-1811)  or Seth Haddix (shaddix@fibrofoundation.org; (281) 630-1982), or fill-in the brief form below
  • Our team will
    • Send our FCF Biobank Consent Form for you to review and sign
    • Discuss the consent process with you and answer questions
    • Work with your hospital to collect tissue not needed for your care
  • You then tell your surgeon that you want to donate your tumor tissue through the FCF Tumor Donation Program and that we will be contacting his/her team

Frequently Asked Questions

Yes. The sooner you contact us, the more likely it is that we can obtain your tissue. If you contact us before surgery, we can work with your hospital to ensure that your tissue is saved and sent to us in the correct way. Otherwise, your tissue may not be useable for fibrolamellar research.

No. Your safety and health always come first. No additional tissue will be removed surgically as a result of your participation in our Tumor Donation Program. Only tissue not needed for diagnosis or care (tissue which would otherwise be discarded) will be donated to us.

Your privacy is very important to us. To protect your privacy, each tissue sample sent to our biobank is labeled with a unique identification number and any personal information is removed. Researchers only see these identification numbers, so they never know the identity of the patients whose samples they receive.

When analyzing your tissue, our researchers may discover something that might be relevant to you personally. However, tests performed for research purposes do not adhere to the same standards as those used to guide clinical decisions, so the results of research tests should not be used to make decisions about care. As mentioned above, if we find something that could impact your diagnosis or treatment if verified, we will share that information with your treating doctor so that they can decide whether it is significant enough to confirm with further clinical testing.

No. The overall results of ongoing fibrolamellar research are published regularly and some results are available on our website, however, it is not possible to share with an individual patient the results of research performed on materials that used their tumor tissue.

Research conducted with your information and specimens will likely not help you directly, but it may help fibrolamellar patients in the future. For example, the research done on tissue in our biobank could result in the discovery and development of new drugs, tests, or other commercial products that advance the field of fibrolamellar treatment for all fibrolamellar patients. Patients who contribute tissue through the Tumor Donation Program will not be given any compensation for such discoveries or commercial products.

Many patients find that planning a posthumous legacy tissue donation provides comfort, knowing they are contributing to a better understanding of FLC and bringing hope to others. If you are interested, please contact the Foundation.

Please note that time is of the essence to make sure tumor tissue remains viable for research. As a result, legacy donations must be coordinated before death.

If you have further questions contact Patty Cogswell at pcogswell@fibrofoundation.org. To download a brief overview of the program click here (for an english version) or click here (para una versión en español).